I'm afraid for my pt. and afraid to go to work.

Nurses General Nursing

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I'm a private-duty home care nurse working for a small agency. My patient is a six y.o. boy on a ventilator, an adverted SIDS pt. who is quadraplegic and gets tube-feedings. He is unable to move at all, except his fingers a little and stretching.

At first, the family (Dad and Mom), seemed nice. They do live in a poor, dangerous part of town. She works, he is around the house, mostly drinking and playing poker on-line. They were somewhat critical of me, "we don't put the blanket on like that", or the window, door, or "leave him alone, let him rest!" when I would do even what I needed to, (pulse ox readings, assessments).

After a few months, I found I was getting yelled at almost everytime I was there, by the Dad. I also smelled pot occas. I saw arguments between the parents. And I came to realize when the evening nurse left at night, the parents didn't do anything and the pt. didn't get care 'til the nurse in morning arrived, (other than, hopefully, they were listening for alarms from the ventilator).

I talked to my supervisor about the Dad being angry with me, and especially smelling pot. She callled him to address the pot issue, he denied all. She was subsequently not supportive with me. Next day, I got yelled at, "this is our house, maybe we have pot, heroin, coke, it's none of your business."

I was there 4days/wk, went down to 2/wk. (for other reasons, but thought things might improve,too.)

Not so, still anger toward me and in general. I witnessed Dad and Mom at pt.'s bedside having a argument. Dad said, "mama better behave or I'll wrap this around..." & he wrapped the pt's ventilator tubing around his neck. She said, "stop it!". I was still smelling pot each time I was there. Mom was sometimes passed-out sleeping.

Last week, the pt. didn't void the whole shift, (usually has no problem voiding). The room had been very cold. He started to vocalize as if crying. I called the office for advice (should I get an cath. order), to report no void/crying and was referred to calling another nurse who works with him more. She is kinda an enabler with the family, but sadly, though, provides more care for the pt. than his parents. She said he's done this a few times before, (but hasn't for 6 mo.). When leaving, I gave report to Dad, told him pt. hadn't voided/was crying. I was trying to be reasuring and said I had called the other nurse and agency, if they need anything during the night, they could call them. Well, I got my daily verbal lashing- "Don't call them, Don't tell on us.. you think you know my son better than me... he's fine.." Shaken, I left the house with echos of the pt.'s crys/whimpers in my head, regretfully. I worried all wk. Today, the agency called me off. My pt. has been in the hospital since the morning after that eve I left last wk. He has pancreatitus. Who knows if he suffered all night, (he had finally voided, though), but when the other nurse came on, he was getting unresponsive. She told the parents, something's wrong, and said he had to go to the hospital. They nearly lost him and have had him on Dilaudid for pain, with other tx, too.

I think the pt. is fully alert, which makes all this worse. He reliably answers questions with thumb movements.

I afraid for my pt. that his parents don't really care if he suffers. He is a pay-check to them (Fed SS money). They don't seem to want him to get better, very resistant to any therapies, like they just want him to lie there. Due to drug usage or up-bringing, they seem unable or unwilling to care if he's in pain. And they should have taken him to the hospital that night, based on that they nearly lost him.

He is scheduled to go home tomorrow. I feel like calling the hospital and telling them about his parent's drug usage and lack of giving care. Is he safe there with them high? My supervisor has already dismissed this, so she is no help.

These people are the kind that would probably come after me, (there are guns in the house).

If I quit all together, I will feel like I'm abandoning my pt.

is quadraplegia, with intact mentition a likely sequelae of SIDS?

THANK YOU, morte!!

i just came upon this thread and just this very moment, i was thinking if this really had to do w/anything r/t SIDS.

haven't read the rest of this thread...

felt compelled to respond immediately to morte's post.

and i'm getting sickened just thinking about it.

leslie

Leslie, I agree with you. I haven't ever done peds, but there's something not quite right here.

Yes, MAYBE the parents are self-medicating because of pain. But it's just as possible they've been using long before the child was born. Doesn't SIDS occurr during infancy if I read this right and he's now 6 years old? I think at this point if the parents haven't taken steps to work on their issues, they aren't going to.

Personally, the minute dad threatened with the vent tubing, I'd have gone outside and called the cops. But it's not too late to call CPS, let the child's physician know, let the case manager at the hospital know, and maybe they can hold him until an investigation is done.

Specializes in ob/gyn med /surg.

please call CPS !!

you know kat, i don't give a rat's behind, why the parents behave as they do.

working inpt hospice, i see enough grieving to last me a lifetime.

but you know what?

throughout this entire grieving thing, many forget about the darned pt themselves.

i am sickened to think this little boy's cognition is intact, and is aware of everything within him, and around him.

i can promise you one thing.

if i was the nurse who was leaving, you can bet your last dollar that i wouldn't leave quietly.

i would be calling cps, the pediatrician, licsw at the hospital, treating physician, cn, and every single adult figure he has in his life (except his parents).

anyone that may disagree with my rage, can just kiss...

ok, nevermind.

peggy, turn that fear into fury.

please, do something.

leslie

Specializes in Emergency & Trauma/Adult ICU.
I was going to concur with some of this advice but make one other observation. I also did some home health many years ago. I took care of a child with Trisomy 22. She had multiple issues. One thing I recall vividly from that incident was the way these two young parents acted out. The mom regressed (sucked her thumb). The parents had many heated arguments. Talk about letting your psych nursing come into play.

Remember the loss of something doesn't have to be through death. These folks have never resolved the loss of the child that "would have been." That child is gone and in place is the one they have. When we get pregnant, we envision a little boy out in the field with a baseball glove throwing balls back and forth to daddy or a little girl playing with her dollies. We don't envision a sick child who will never be able to do those things. When we are blessed with a child such as this, who btw, can be a tremendous blessing to the family once these feelings are resolved, we have to work through the grieving process because the child that we envisioned is gone.

How can they admit that without feeling burdened beyond comprehension with guilt? Who would understand such a feeling? IOW, aren't we supposed to love this child just as he is? They are perfectly well aware of the fact that it is nobody's fault and that the child is certainly not at fault. They are angry with God sometimes. They are angry with themselves no matter how many times you tell them it isn't their fault. The drugs (pot) are to ease these symptoms. They are probably self-medicating. I don't know if any of you are aware of that kind of drug usage with illegal drugs. When they lash out in anger at you, it is probably because they are stuck in that state of grieving. Few people even recognize this because they are only trained to recognize these symptoms once the person has passed away.

It may seem at this point that the trust connection is non-existent. However... I wouldn't be surprised if these people do trust you because they feel comfortable enough that they can vent that anger on you. Unfortunately, it is like a viscous cycle right now. They probably feel even more guilt once they've lashed out of you and then rush off to smoke some pot to relieve the pain.

There are folks that have worked through these things and have been able to help others work through theirs. I have many friends who have.

Vera

I'm not disagreeing that the ineffective coping behaviors you describe here can be present in the parents of a disabled child.

However, those are big assumptions. One or both parents may have been habitual drug users before the child was born. The underlying reasons for the drug use, whatever they may be, are secondary to the fact that drug use in the home puts the child at considerable risk. And that is the basis for OP's (hopefully immediate) call to CPS.

Please call CPS at once so they can investigate and get this child the help he needs. If we suspect abuse it is out obligation to report it. Make the call today. Resign from that agency. They aren't supportive and are more interested in the money the case brings in than the child at hand.

Specializes in Hospice.

I agree completely with the advice given here: report and resign.

You are perfectly justified in reporting both the parents and the agency as well as your supervisor for blowing off your report. It's natural that an agency would be reluctant to report a paying customer, but agencies and all licensed providers are mandated reporters in most states. It's beyond irresponsible for your supervisor to minimize this. Perhaps knowing her own license is on the line will encourage her to rethink her behavior.

However, your concerns about retaliation are entirely legitimate. The CPS report needs to happen asap ... the combination of angry parents, drugs both legal and not and the presence of firearms in the home add up to a very scary situation.

Once the CPS report is made, there may be time to take steps to protect yourself before doing anything else. If you are worried about immediate reaction from the parents, perhaps you can decline the case without actually resigning from the agency?

If so ... you could do that while you quietly seek other employment. Once your need for a job is dealt with, you can then proceed with complaints against the supervisor and the agency ... otherwise, I worry that you may be blacklisted in your area. They need to be reported. The agency is taking money to care for this youngster and it's reprehensible and illegal to cover up a dangerous situation in order to keep the account.

There's no way around it, there's a certain amount of physical and professional risk to you ... and you are basically required to take that risk in order to protect the child. I'm wishing you all the courage and protection you need ... and heaven's blessings on you for stepping up. You are a nurse!!

CALL Child Protective Services ASAP- you need to be an advocate for your patient- let CPS investigate- if they do nothing, at least you tried. Maybe you could even call the police about the drugs??

I'm not disagreeing that the ineffective coping behaviors you describe here can be present in the parents of a disabled child.

However, those are big assumptions. One or both parents may have been habitual drug users before the child was born. The underlying reasons for the drug use, whatever they may be, are secondary to the fact that drug use in the home puts the child at considerable risk. And that is the basis for OP's (hopefully immediate) call to CPS.

I honestly don't know what other language to say this in. :) I am not disagreeing with the course of action at this point. I am merely stating how parents respond when the child they dreamed of is gone and the fact that they go through the grieving process. When a person is in that anger stage, they can be quite irrational.

I haven't read the new stuff on SIDS....yet... but at least from my last encounter with it, they were not really sure what causes it. There are new theories and now all moms are told to keep their children on their backs after feedings instead of placing them in a prone position. But it is a horrible feeling to think that this could have been avoided if only.......

Anyway, in another post, I made the point of how much I disagree with how we might deal with a person that exhibits that anger such as telling them "it's ok to be angry with everyone for a while." It isn't ok and this is the very reason it isn't ok. It is so important to help people to get past this point as soon as possible.

From what she shared here, I had gathered that this was not a new situation but something that had been going on for quite some time but has now escalated to a critical point. It is the very fact that most people are taught today to concentrate on the client as opposed to the whole situation that lends to this situation getting so out of control. I personally would have been addressing the situation way back, when the man started yelling at me the first time. I don't have to put up with that kind of nonsense and be assured, I would have addressed it to him and possibly to the supervisor. I would have also talked to him about what he was going through. But at the same time, when you are caring for a pediatric patient, you are also in close contact with parents. They are a very real part of the whole of that child. To suggest that they are separate is almost out of touch with reality. Those people, for better or for worse, are that child's parents not the nurse. No matter how this happened whether it was congenital or an accident, parents grieve over the loss of the child that "could have been' just like folks go through when someone died. I have experienced that phenomenon many times.

I am in full agreement with you that he has no excuse for venting on the nurses, smoking pot and do whatever because he's angry. Anger is a very destructive harsh human attribute that, imvho, should be nipped in the bud not only for the sake of all those around but for the sake of the person. It eats you from the inside out. I was just shedding some light on possibly why he is angry. I hope he gets some help and counseling.

Vera

Specializes in Rodeo Nursing (Neuro).
I'm not disagreeing that the ineffective coping behaviors you describe here can be present in the parents of a disabled child.

However, those are big assumptions. One or both parents may have been habitual drug users before the child was born. The underlying reasons for the drug use, whatever they may be, are secondary to the fact that drug use in the home puts the child at considerable risk. And that is the basis for OP's (hopefully immediate) call to CPS.

I'm not really disagreeing, either, but I have to observe that "habitual drug use," is also a pretty big assumption.

The OP originally stated "occassional" marijuana use, though her subsequent posts sound more like daily use, at least. Not good, certainly, but I'm not sure even that, in itself, puts the child at risk. Husband stoned while a nurse is present: child in capable hands. Wife home when nurse isn't present: child might still be in capable hands, though in the context, there's certainly room for concern.

What I'm getting at is, I've known people who've used pot, sometimes rather more than they probably should. I'm not endorsing it, but while pot is illegal, it's a lot less dangerous than many controlled substances. I know heavy marijuana use can purportedly lead to psychotic behaviors, but I've never seen it. I have seen a couple of instances of people who were noticeably less psychotic when smoking than when drinking, and a number who were consistently able to perform ADLs while stoned. I can't imagine anyone being able to care adequately for a disabled child while stoned. But I do think it's a reasonable hypothesis that the husband's marijuana use may be a symptom of his problems, rather than a cause. And I can well imagine that the stress of having a disabled child may add to those problems.

None of which is to say the situation is tolerable. The father's behavior is certainly cause for alarm, and the child needs to be protected. And, assuredly, the OP needs to protect herself. Even if we were charitable enough to believe that the parents meant well--and that seems awfully charitable, based on the information we have--it seems clear they're over their heads in this, and intervention by the appropriate authorities is needed. It doesn't sound like a situation where the OP alone is in any position to guide them.

I am, however, reminded somewhat of a situation which occurred at my facility, in which the spouse of a terminally ill patient was accused of some rather bizarre behavior and treated, I feel, a bit insensitively by several of my coworkers. The spouse had refused to put the patient on "comfort measures," and was rather insistent about being permitted to feed the patient orally, although the patient had a G-tube. My peers were quite properly concerned about the risk of aspiration and tried to educate the spouse, but to little avail. As the situation escalated, a perception grew that the spouse was "crazy," or even "a monster." There was a good deal of talk about our duty to our patient, but I felt, and still do, that we needed to broaden our definition of "patient," to include the spouse, who in my estimation was having difficulty coping with the loss of a loved one after decades together. So, when the patient was assigned to me one night and the spouse wanted to offer a "pleasure feed," I said I would assess the spouse's technique and document it in my notes. Feeding went well, note was written, patient may or may not have gotten some benefit from the food, but clearly did seem to enjoy the attention, and the spouse was comforted, a little.

I don't say this applies to the OP's situation, nor even that my one flash of insight on one particular night qualifies me for sainthood, or even nurse-of-the-year. I only say that reading Vera's post reminds me that treating the patient often includes treating the family. I'm sure that's not news to many of the other nurses posting here.

Reading about this case at a distance, it's natural to sort of fill in the blanks from our own experience, and that experience is valid. I guess I'm just reminding myself that sometimes even jerks need compassion.

This concludes my sermon. Sorry. I get a little carried away, at times.

Guy sounds like he knows the inside of a jail cell quite well. People like this could care less about his grieving process- he's probably happy to be getting a check and having very little responsibility.

I have to disagree with Verandoug- who obviously has a heart of gold and possibly never worked a prison (I'm assuming).(?)

Daddy is a controlling, abusive, lazy, free loading druggie. Not a parent-almost not human. Lots of these in prison- many more in society jush pushing the envelope. That is what this guy is doing. Knows who he can push and what he can get away with.

Soul-less.

I'm a private-duty home care nurse working for a small agency. My patient is a six y.o. boy on a ventilator, an adverted SIDS pt. who is quadraplegic and gets tube-feedings. He is unable to move at all, except his fingers a little and stretching.

At first, the family (Dad and Mom), seemed nice. They do live in a poor, dangerous part of town. She works, he is around the house, mostly drinking and playing poker on-line. They were somewhat critical of me, "we don't put the blanket on like that", or the window, door, or "leave him alone, let him rest!" when I would do even what I needed to, (pulse ox readings, assessments).

After a few months, I found I was getting yelled at almost everytime I was there, by the Dad. I also smelled pot occas. I saw arguments between the parents. And I came to realize when the evening nurse left at night, the parents didn't do anything and the pt. didn't get care 'til the nurse in morning arrived, (other than, hopefully, they were listening for alarms from the ventilator).

I talked to my supervisor about the Dad being angry with me, and especially smelling pot. She callled him to address the pot issue, he denied all. She was subsequently not supportive with me. Next day, I got yelled at, "this is our house, maybe we have pot, heroin, coke, it's none of your business."

I was there 4days/wk, went down to 2/wk. (for other reasons, but thought things might improve,too.)

Not so, still anger toward me and in general. I witnessed Dad and Mom at pt.'s bedside having a argument. Dad said, "mama better behave or I'll wrap this around..." & he wrapped the pt's ventilator tubing around his neck. She said, "stop it!". I was still smelling pot each time I was there. Mom was sometimes passed-out sleeping.

Last week, the pt. didn't void the whole shift, (usually has no problem voiding). The room had been very cold. He started to vocalize as if crying. I called the office for advice (should I get an cath. order), to report no void/crying and was referred to calling another nurse who works with him more. She is kinda an enabler with the family, but sadly, though, provides more care for the pt. than his parents. She said he's done this a few times before, (but hasn't for 6 mo.). When leaving, I gave report to Dad, told him pt. hadn't voided/was crying. I was trying to be reasuring and said I had called the other nurse and agency, if they need anything during the night, they could call them. Well, I got my daily verbal lashing- "Don't call them, Don't tell on us.. you think you know my son better than me... he's fine.." Shaken, I left the house with echos of the pt.'s crys/whimpers in my head, regretfully. I worried all wk. Today, the agency called me off. My pt. has been in the hospital since the morning after that eve I left last wk. He has pancreatitus. Who knows if he suffered all night, (he had finally voided, though), but when the other nurse came on, he was getting unresponsive. She told the parents, something's wrong, and said he had to go to the hospital. They nearly lost him and have had him on Dilaudid for pain, with other tx, too.

I think the pt. is fully alert, which makes all this worse. He reliably answers questions with thumb movements.

I afraid for my pt. that his parents don't really care if he suffers. He is a pay-check to them (Fed SS money). They don't seem to want him to get better, very resistant to any therapies, like they just want him to lie there. Due to drug usage or up-bringing, they seem unable or unwilling to care if he's in pain. And they should have taken him to the hospital that night, based on that they nearly lost him.

He is scheduled to go home tomorrow. I feel like calling the hospital and telling them about his parent's drug usage and lack of giving care. Is he safe there with them high? My supervisor has already dismissed this, so she is no help.

These people are the kind that would probably come after me, (there are guns in the house).

If I quit all together, I will feel like I'm abandoning my pt.

If that man has a gun in the house and he would probably come after you...

Believe me, you safety comes first. It is time to find another job.

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